FORMERLY KNOWN AS THE ALZHEIMER’S ASSOCIATION, NYC CHAPTER

Utility bills are piling up in the sock drawer.

You found shoes in the freezer?

It’s Never Too Early (Or Too Late) To Talk About Alzheimer’s Support

Dad went to buy milk for the fifth time today. The cat was fed ten times

SUMMER 2016 today! • SAVE THE DATE! Annual Meeting - 10/18/16 Traumatic Brain Injury: Prevention, Treatment, and the Consequences p.23

1 Board of Directors Executive Staff Stephen P. Casper Lou-Ellen Barkan Carol Berne Co-Chair President & Chief Executive Officer Senior Vice President of Development

John R. Latham Jed A. Levine Matt Kudish Co-Chair Executive Vice President, Senior Vice President of Caregiver Services Director of Programs & Services Sharon K. Kilmer Steve Maggio Vice Chair & Treasurer Peggy Chu Senior Vice President & Chief Financial Officer Senior Vice President & Chief Administrative Officer Pauline Yeung-Ha Secretary Staff Directors Abigail Nathanson Elvira Bisignano Director of Support Groups Jennifer Balka Marissa Wright Constituent Events Associate Social Worker William M. Brachfeld Alex Wong Steven E. Boxer Financial Analyst Jennifer Camper Meredith Wong Ari F. Cohen Graphic Designer Manager of connect2culture® Douglas Cowieson Amy Torres Marianne Dziuba-Fiore Director of Training Jessica Herold Minnelly Vasquez Helpline Specialist Helpline Associate Lori Oscher Friedman Ana M. Araujo Nathan Halegua Social Worker Jori R. Schwartz Niurqui Mariano Jonathan S. Henes Respite Specialist Manager of Healthcare Outreach Peter J. Hill Ann Margaret Schoemaker Senior Donor Services Associate Joyce Koshy Patrice Crocevera Benjamin J. Jenkins Manager of Human Resources Coordinator of Program Jeffrey N. Jones Anne M. Foerg Evaluation Linda LaGorga Director of Social Work Juan Carlos Rojas J. Francis Lavelle Dementia Care Trainer Paula Rice Aaron H. Marks Asif Baksh Manger of African American Vice President of IT & Digital Julie Wang Outreach Anne McBride Schreiber Media Coordinator of Training Wayne S. Miller Rashidah Daniels Abraham Podolsky Bart Gentile Kelly Keenan Administrative Assistant, Louis Salerno Systems Administrator Marketing & Communications Wanderer's Safey Program Mike Schnitzer Associate Brenda Green Rita Greenfield Elaine Thomas Staten Island Outreach Social Larry Ng Social Worker David L. Weinberg Worker Donor Services Associate Mark A. Zurack Roberto Reyes Candace Douglas Lateefah Morse Manager of Latino Outreach Director of Constituent Events Grants Manager Emeritus Ruby Fernandez-Brown Cecibell Montalban Lauren Volkmer Helpline Specialist Marilyn L. Cohen MedicAlert Wanderer’s Safety Director of Early Stage Center Sunnie Kenowsky Irving, DVM Program Associate Sandra Martinez Susan V. Kayser, Esq. Linda Centeno Manager of Donor Services Heath B. McLendon Cheshire Schanker Executive Assistant Queens Outreach Social Worker Serene Nie Lonnie Nemiroff Social Worker Ex Officio Chris Doucette Early Stage Center Social Laurel Crosby Director of Administration Worker Stephanie Aragon (Junior Committee) Director of Helpline Crissy Vicendese Lori Randall Senior Development Associate Dementia Care Trainer Suzanne Metzger Director of Constituent & Public Relations Danielle Bruzese Lorna Walcott-Brown Corporate Engagement LAK Public Relations, Inc. Manager of Marketing & Brooklyn Dementia Care Communications Specialist Tatiana Vivieca Copy Editor Executive Assistant Jenna Hammond Danielle Robitaille Maggie Marra Vice President of Marketing & Helpline Specialist Weijing Shi Photographer Communications Manager of Chinese Outreach Ron Glassman Makaria Martin-William DaQuan McKie Accounts Payable Associate Xue Mei www.caringkindnyc.org Administration Assistant Senior Accountant 24-hour Helpline: 646-744-2900 Marcia Henne Ed Cisek Receptionist Yvette Bynoe Join us: Vice President of Program Manager of Concierge Services facebook.com/caringkindnyc Evaluation Marcia Langhoff twitter.com/caringkindnyc Senior Executive Assistant instagram.com/caringkindnyc Elizabeth Bravo Santiago Director of Wanderer's Safety Maria Mursch CaringKind does not endorse products, manufacturers Program Manager of Early Stage Center or services. Such names appear here solely because they are considered valuable as information. The Fran Koleba Marilucy Lopes organization assumes no liability for the use or content Receptionist Manager of Education of any product or service mentioned.

2 24-Hour Helpline 646-744-2900 In This Edition

4 President's Message 5 From the Program Director 6 Feature

8 Early Stage Center

9 New York State Grant

10 Wanderer's Safety Program

11 Support Groups

12 News You Can Use Interview with Dr. Richard Isaacson p. 6 14 Palliative Care

15 Dear Helpline

16 CaringKind in the News

17 Charles Evans Lecture

18 Development Update

19 Planned Giving

20 Forget-Me-Not Gala

22 Bryant Park Memory Chairs

Driving and Dementia p. 12 23 Annual Meeting

24 Together We Care

25 Choosing a Nursing Home

26 Advance Directives

27 connect2culture

28 Junior Committee

30 Athletes to End Alzheimer's

32 CaringKind Alzheimer's Walk

34 Summer/Fall 2016 Calendar

CaringKind Alzheimer's Walk p. 32

caringkindnyc.org 3 President’s Message

Dear Friends,

You’re on your way home from work when your wife calls and asks you to stop at the corner grocery store to pick up some milk. You oblige. The store owner, who’s known you for LOU-ELLEN BARKAN years, looks puzzled. He confides that your wife has been in President & CEO [email protected] the store three times today—for milk.

Your father has Alzheimer’s. He no longer recognizes you. He’s increasingly paranoid. When he speaks, he makes no sense. He can’t get around. You feel lost and alone.

No matter where you are on your I was blessed, however, to have Since its founding in 2004, Cure caregiving journey, it is never too CaringKind professionals help me Alzheimer’s Fund has contributed early — or too late — to talk to the navigate some very difficult decisions more than $38 million to research, professionals at CaringKind. Whether at the end of my mother’s life. Looking with 100% of every dollar raised you have a suspicion that something back, I now know that I should have going directly to fund some of the might be wrong with a family member sought help much sooner than I did. best scientific minds in the world. or friend or whether you’ve been But the important point is that I Even though our partnership is just struggling on your own for years asked for help. And when I did, I was launching, it’s not too early for me to say caring for someone who has dementia, able to care for my mom with greater thank you to CEO Tim Armour and his don't be afraid to ask for help. You confidence and less stress. Each team for working with us to create this don’t have to travel this road alone. day was easier for me and for her. exciting new care and cure alliance.

A compassionate, trained CaringKind The second hat is one I wear proudly: I see clearly that great things are Helpline Specialist is always available President and CEO of CaringKind. ahead for CaringKind. In the eight to talk to you at 646-744-2900, 365 As we have moved through this time months since we returned to our roots days a year, 24 hours a day, in more of significant change, your message as an independent, local organization, than 200 languages. That first call came through loud and clear. You told calls to our 24-hour Helpline, program introduces you to a community of us unanimously that you stand by our participation, client interactions with people who have walked in your decision to focus on the best therapy social workers, and, most importantly, shoes and understand what you’re available today: good caregiving. awareness of who we are and what going through. Our free educational we do are all dramatically up. programs, support groups, social So, almost a year into this very work services, and arts programs exciting transition, it’s not too late We know this also means the will envelop you in a world of care for me to say THANK YOU. Whether community’s need is growing. So that will ease your burden and you are an individual donor, corporate please remember, it’s never too make each day a little brighter. supporter, foundation or government early or too late to ask for and get official, your generosity is the driving our help, to become a CaringKind As many of you know, I wear two force that allows us to create a world supporter, or to become an advocate hats in the world of Alzheimer’s where the stigma of an Alzheimer’s for good care. We are here for all caregiving. First, I was a caregiver or dementia diagnosis no longer New Yorkers. We are here for you. for my parents, both of whom had forces families to retreat within and dementia. And, even though I was in where no one is afraid to ask for help. charge of this incredible organization that provides superb support to Our disaffiliation from the national NYC’s Alzheimer’s community, when Alzheimer’s Association has also it came to making critical decisions allowed us to form an alliance with about my mother's care, I was shocked an extraordinary new research to learn how much I didn't know. organization, Cure Alzheimer’s Fund.

4 24-Hour Helpline 646-744-2900 From the Program Director

Dear Readers,

The explicit message of our recent and very successful subway ad campaign funded by a grant from the New York State Department of Health was, “It’s never too early or too late to JED A. LEVINE ask for Alzheimer’s support.” The implicit message is that the Executive Vice President, Director of Programs & Services timing of when to reach out for help is highly personal, both for [email protected] the person who is diagnosed and his or her family.

Some go into action immediately, • Enroll the person you are caring for and to engage in stimulating and seeking help, looking for resources and in the MedicAlert® NYC Wanderer’s enriching (not to mention, fun!) information, and creating a plan. Others Safety Program. Enrollment is programs. Because the program is are not so quick to act for a variety of available free of charge to those who limited to those with a diagnosis of emotional and practical reasons. We are cannot afford the fee, and provides mild cognitive impairment or early here to help find the right approach and identification in case the person with stage Alzheimer’s, the earlier you resources for each individual and family. cognitive impairment goes missing. apply, the better. As we often say, we need to hope for Hearing the words “You have Alzheimer’s” the best and plan for the worst. If • Consider joining a support group has a profound emotional impact the bracelet is worn, everyone can even if you think it’s too early — or on the person diagnosed, as well as breathe a little easier. Without it, an too late. Many caregivers say they family members. Denial is a normal, episode of wandering is even more wish they had joined earlier. The and healthy, coping response to the terrifying for families and friends sense of relief, of being understood, diagnosis, allowing time to process and challenging for the police and of community is powerful and the information, work through the officers who are trying to help. healing. initial challenge to a sense of self, and protect against feeling real terror. But • Begin long term care planning by • Connect2culture® offers a wide if denial persists, it inhibits the process speaking with a CaringKind Social range of art, music, dance and other of getting help and support. Worker, and attend the educational cultural programs for persons with meetings that explain the different the disease and their family or The feelings of guilt, fear, and anger may care and respite options, as well as paid caregivers. What a gift it is to reinforce or get in the way of the need how to pay for them. This is best done experience the rich cultural variety to get help. Fortunately, CaringKind’s when the individual still has capacity of New York City in an environment staff is skilled in helping individuals to participate in the discussions that supports patrons with cognitive process and understand the impact and make his or her wishes known. impairments, where no one has to of a diagnosis and providing guidance Although there are strategies to be embarrassed or uncomfortable. for them to access critical resources. help with financing care at the time Although it is never too late to ask for that it is needed, attending a Legal Remember all CaringKind programs help, there are several advantages to & Financial Seminar and meeting are free of charge. You don’t have to accessing CaringKind’s programs and with an elder law attorney gives you face Alzheimer’s alone. It is never too services earlier rather than later. Here’s both options and time to understand early or too late. Call us at 646-744-2900 how you can get started: the complicated system of payment at any time to learn more about these and access to long term care, as well programs or visit caringkindnyc.org. • Call our 24-hour Helpline at 646- as the opportunity to create a plan You’ll be glad you did. 744-2900. Often we hear that callers that is best for you and your family. wished they had called sooner. Our expert Helpline Specialists provide • Participating in the Harry and a supportive ear, access to local Jeanette Weinberg Early Stage Center programs, and introductions to the provides persons with early stage wide range of services offered by Alzheimer’s and other dementias the CaringKind, including our extensive opportunity to socialize with others education and training programs. going through the same experience

caringkindnyc.org 5 Feature

Interview with Dr. most challenging subject for me. is “clinical precision medicine.” The Also, my brother is a neurologist who term “precision medicine” was coined Richard Isaacson specializes in Parkinson’s, so maybe at Cornell. there’s something in my DNA. Clinical precision medicine is the I’ve had four family members with best term because there is no one- Alzheimer’s disease, so I’ve seen it size-fits-all approach when it comes from very early to late stage, when to Alzheimer’s treatment, Alzheimer’s people go into institutional care. I got risk reduction, or the path towards most involved with a cousin when she Alzheimer’s prevention. RICHARD S. ISAACSON, M.D. was diagnosed with memory issues. After I talked to her primary care JL: Were you concerned about the doctor, I was certain I made the right name being misleading or leading Richard S. Isaacson, M.D., serves as choice to specialize in Alzheimer’s people to believe that there is actually Director of the Alzheimer’s Prevention disease. more than you can deliver? Clinic, Weill Cornell Memory Disorders Program, and Director of JL: You definitely have a deep personal RI: I’ve been extraordinarily careful the Neurology Residency Training interest in this. Can you tell us about about using the word prevention. Program at Weill Cornell Medicine/ your work at Weill Cornell Medicine/ If you look on our flyers, we say, “A NewYork-Presbyterian Hospital. NewYork-Presbyterian Hospital? new approach to brain health,” or we say, “A personalized approach to Dr. Isaacson specializes in Alzheimer’s RI: In 2005, I finished my training and cognitive health.” In our verbiage, we disease (AD) risk reduction and in 2009, I saw an Alzheimer’s patient don’t use the terms “Alzheimer’s” and treatment, mild cognitive impairment whose son was a doctor. After the “prevention” in the same sentence due to AD and pre-clinical AD. diagnosis, he asked, “So, Isaacson, frequently. His research focuses on nutrition I know you have several family and the implementation of dietary members with this disease. What do But, with our stake in the ground, and lifestyle interventions for AD you do to try to prevent it?” In 2009, I we finally decided to be courageous management. also saw my first patient referred for and controversial and put the words Alzheimer’s risk reduction. Over the “Alzheimer’s” and “prevention” in the next several years, about 20 percent same sentence and we added the Jed Levine (JL): Richard, thank you of my practice was focused on family word “clinic.” for taking the time to talk with us. members of patients with Alzheimer’s Let’s start by talking about how you to determine if they could do anything The key here is that, in 2016, we can became interested in Alzheimer’s, to reduce their risk. use these terms together similar to dementia and cognitive health. the way we do with other diseases. In 2013, I was recruited by Weill For example, when I say you can Dr. Richard Isaacson (RI): When I Cornell Medicine to continue that prevent a heart attack or you can was in high school, my Uncle Bob work on a full-time basis. Now, 20 prevent a stroke, I have to ask, can was diagnosed with Alzheimer’s. Back percent of my work is treatment that you really prevent a heart attack or then it was called senility or senile includes mild cognitive impairment stroke? Maybe, but you can’t prevent dementia. We didn’t know what it was, due to Alzheimer’s as well as all heart attacks and strokes. but he definitely changed. Initially, it Alzheimer’s disease dementia. In 2013, was little things we blamed on age. we also opened up the Alzheimer’s Based on our hypothesis, supported Then, as he got worse, it wasn’t just Prevention Clinic, which takes a deep by the data and our observations, his memory, it was behavior and dive into a person’s risk. We try to a subset of patients who are at risk personality. That was the first time identify their modifiable risks versus of Alzheimer’s disease can prevent I saw Alzheimer’s disease. their non-modifiable risks, and then Alzheimer’s, or at least delay it long put together a personalized plan, enough for the development of a Throughout medical school, I was based on genetics and multiple other blockbuster drug. In other words, interested in the brain and planning factors. The term for this process through lifestyle and other medical to do neurology, which was the

6 24-Hour Helpline 646-744-2900 Feature changes, they can effectively prevent When it comes down to it, we are The field is in its infancy, so we literally Alzheimer’s disease. applying the best evidence in terms of learn every day. What we’re seeing the randomized control trials. We are now, and we have recently published The term “Alzheimer’s prevention” is also applying our best epidemiological some preliminary data on this, is that still controversial, but with Alzheimer’s evidence to reduce someone’s risk for if people take control of their brain prevention trials going on now, people Alzheimer’s. Similar to heart disease or health and listen to the things that we see me when they are over 65 to stroke, we are trying to reduce risk or tell them to do, there are certain areas see if they qualify for an Alzheimer’s delay onset. The problem is if someone of their cognition that will improve. prevention trial. thinks Alzheimer’s is inevitable, the As an example, processing speed default is to do nothing proactively will improve. Executive function will The A4 study has just changed the way to protect themselves or reduce their improve and this is not just “practice the whole field will look at Alzheimer’s risk. The number one reason patients effect.” This is six months later, disease and, hopefully, make the in my clinic are not proactive is fear of validated data in multiple domains. largest impact on Alzheimer’s disease. the worst disease on Earth. We’re improving cognitive function. That being said, we have five years or You can read more at www.ncbi.nlm. more until we see any data, and we JL: There are things that are particularly nih.gov/pubmed/27116241. don’t have a blockbuster drug on the terrifying about Alzheimer’s. horizon yet. JL: Are you improving memory? RI: When people get the notion that In a clinical setting, we put people on there’s nothing they can do and they RI: We’re not improving memory as an evidence-based, relatively low-risk, keep eating a certain way, don’t see robustly. Memory has been about personalized, and clinically precise their primary care doctor, don’t take the same. Improving memory is the intervention plan to reduce risk. This their blood pressure medicines or fight hardest thing. But executive function, is not something where someone their diabetes, they haven’t addressed processing speed and overall cognitive says, “Okay, exercise and eat better.” easy modifiable risk factors that can function are absolutely improving in This is, “Well let’s see, the evidence protect brain function. We now have people that are the most compliant. on nutrition is X, but your nutritional enough evidence to say that. biomarkers are Y, Z, A, D, E, and K, so Biomarkers are also improving. let’s tell you to eat the following...” It’s a JL: That’s an important distinction. Cholesterol and omega-3 fatty acid customized plan that is so customized Controlling things that you can control levels in the blood may improve. that, right now, we’re one of only three to maintain health and, as a byproduct, Homocysteine may come down and Alzheimer’s prevention type clinics in maintaining brain health is relevant. B vitamin levels may come up. Low the United States. Even in the face of a difficult disease, vitamin D has been corrected. If we the hope is that you’re going to improve can hit this disease from a metabolic JL: Where are the other two? the quality of life and the outcome for perspective before the amyloid gets the individual. there, then we can delay amyloid from RI: The Alzheimer's Prevention depositing. That’s what we are looking Program at Cedars Sinai in Los Angeles RI: Our team collectively spends up for. and at the University of Alabama at to seven hours for every patient to Birmingham. Their title of the clinic give that individualized “What can you Read more of the interview with Dr. is The UAB Alzheimer’s Disease Risk do to reduce your risk?” Each patient Richard Isaacson in the Fall 2016 Assessment and Intervention Clinic, has to fill out a 45-minute survey and newsletter. which is, I would say, a more accurate take a 45-minute online course about term and a more careful term. the genetics, the risk factors, and the Actually, it may be the best title. Dr. stages of Alzheimer’s. I see each patient David Geldmacher was too cautious for an hour and a half. We do an hour to put the words Alzheimer’s and and a half of cognitive testing, body prevention together. I have always measurements and cognitive games on felt okay about it because if I have an the computer. These are followed by a Alzheimer’s prevention clinical trial, team discussion conference that takes that legitimizes it in some way. 20 to 30 minutes per patient.

caringkindnyc.org 7 Early Stage Center

5th Annual Gathering for People with Early Stage Memory Disorders

The Gathering started with a light breakfast and warm welcome from Lou- Ellen Barkan. The morning LONNIE NEMIROFF session, entitled Here’s Early Stage Center Social Worker Your Chance!, was led by [email protected] Dr. Warachal E. Faison, geriatric psychiatrist and Medical Director of The 5th Annual Gathering for People with Women’s and Men’s Health Early Stage Memory Disorders marked at Pfizer. The session my first day on the job as an Early Stage provided participants with Center Social Worker. It was an exciting the unique opportunity to Participants sing and play percussion during the afternoon and memorable start to my career with talk candidly with a doctor session of The Gathering, called Connecting with Your CaringKind, and a unique opportunity about dementia for an Musical Self and led by Suzanne Tribe. to begin getting to know staff and, most extensive period of time. Dr. importantly, the Center’s participants. Faison answered numerous in times of stress. She then handed questions, covering an array of topics out small percussion instruments to The Gathering, held on May 20, was surrounding dementia, such as the anyone who wished to play them. As attended by 50 people with a diagnosis latest on research, medications, disease Suzanne led the group in such songs of early stage dementia and their group progression, and nutrition. Dr. Faison as “What a Wonderful World” and “This leaders. Two early stage support also highlighted the importance of Little Light of Mine,” participants played groups traveled from Stamford, CT and maintaining an active lifestyle, socially, their instruments, sang along, and even Newburgh, NY to join our Early Stage physically and mentally, when in the danced! Afterwards, people shared the Center participants for the event. As early stage of dementia. Dr. Faison sense of happiness, tranquility, and people arrived, smiling and greeting utilized an interactive approach in her enjoyment they felt as they participated one another, it became evident to me discussion about changes in the brain, in this workshop. One client noted the just how special this day was for them. which made the conversation even positive effect that music has on her Throughout the event, participants more stimulating and less abstract. mood. Another client was so inspired that met new people, conversed with and he bought his own drum to play at home. learned from one another, shared After the morning session, participants their experiences with memory enjoyed a delicious lunch, chatted, As Suzanne played her final song of loss, and simply enjoyed themselves. laughed, and got to know one another the day, people sang and danced on th better. The afternoon session, their way out, bringing the 5 Annual entitled Connecting with Your Gathering to a close on the highest Musical Self, was the highlight of notes. All in all, the Gathering was of the day. Board-certified a success and so, too, was my first music therapist Suzanne Tribe day as an Early Stage Center Social began by briefly discussing the Worker. I am looking forward to not only history and purpose of music attending the Gathering next year, but therapy, as well as settings also being a part of the team to plan it. where it is used. Suzanne then led a musical guided meditation and relaxation, which reminded From left: Manager of Early Stage Center everyone why it’s important Maria Mursch, Dr. Warachal E. Faison, Suzanne Tribe, Director of Early Stage Center Lauren Volkmer to focus on their breathing

8 24-Hour Helpline 646-744-2900 New York State Grant

Expanding the State's Alzheimer's Community Assistance Program

by calling 646-744-2900 or emailing for hundreds of persons affected by us at [email protected]. dementia each year. Training like this does not exist anywhere else in NYC. As more people connect with us, each with their own complicated dementia Connect2culture® is CaringKind’s MATT KUDISH journey, we have seen an increase in cultural arts initiative for persons with Senior Vice President of Caregiver Services referrals to our Social Work Services dementia and their caregivers, and with [email protected] department. From individual and this state funding, we have hired a full- family counseling to the development time Manager of connect2culture, who and implementation of complex care will focus on working with cultural The last year has been filled with plans and assistance navigating the institutions throughout the city that significant changes at CaringKind. In ever-changing landscape that is long have existing access programs, as well addition to launching our new name term care, our Social Workers are as providing expert guidance for new and brand, we’ve simultaneously working with more clients than ever. entities as they develop and launch experienced unprecedented growth As such, we took the opportunity to successful programs. In addition to of our staff and our programs. With grow our Social Work team so we can working with long-standing partners the support of the New York State both better meet the demands of our such as the Jewish Museum, the Department of Health, CaringKind has clients and conduct more meaningful Brooklyn Museum and the Intrepid Air been able to expand our much-needed outreach and education across diverse and Space Museum, we are thrilled to programs and services throughout communities. We added two social be partnering with new organizations the city. CaringKind has received over workers in our Social Work Services including Lincoln Center for the $1.1 million annually for the next two department who are based at our Performing Arts, the Brooklyn Public years through an expansion of the midtown Manhattan headquarters, as Library, and the Brooklyn Botanic State’s Alzheimer’s Disease Community well as two new Outreach Social Worker Garden. For more information about Assistance Program (AlzCAP). This positions: a social worker dedicated connect2culture, and to learn where project has enabled CaringKind to to residents of Staten Island, and programs are offered in your area, visit enhance several existing programs, another to the Korean communities caringkindnyc.org/connect2culture. as well as develop new programs of NYC. To learn more about how our to better support the unique needs Social Work Services can assist you, These funds have also allowed us to of NYC’s Alzheimer’s communities. call our 24-hour Helpline and ask to expand our Education department by speak with a Social Worker, or visit us hiring a manager to build on the many CaringKind’s 24-hour Helpline is how online at caringkindnyc.org/socialwork. meetings we offer regularly. In the the vast majority of our clients first coming months we will bring several make contact with us. As news of the We have also expanded our Training meetings to locations throughout the good work we do continues to spread, department. Through the AlzCAP grant, city and develop new programs for and call volume grows, it is increasingly we have hired a Chinese language family caregivers and professionals important that we are able to continue trainer who will facilitate trainings alike, including more continuing to meet the needs of our callers. With throughout the NYC area in both English education programs for social workers. this in mind, we have added two and Mandarin, including our nationally additional Helpline Specialists—b oth recognized Dementia Care Training for All of this growth and expansion is to of whom are bilingual in English and Professional Caregivers (DCTPC) and ensure we are fully prepared to meet Spanish. These new staff members our 10-hour Family Caregiver Workshop. the needs of all New Yorkers affected by enable us to not only respond to each The DCTPC is a seven-day program dementia. And with all of our programs call when it comes in, but to do so with designed exclusively to enhance the and services available free of charge, it unprecedented linguistic and culturally ability of paid caregivers of persons truly is never too early, or too late, to talk appropriate expertise. You can reach with dementia and is changing the about Alzheimer’s and dementia support. our Helpline 24/7/365 in 200 languages way care is provided, and received,

caringkindnyc.org 9 Wanderer's Safety Program

It's Never Too Early, But It Can Be Too Late

However, Mrs. J declined and said • Take a photograph of the person that she would wait because he was you are enrolling. Keep this not currently wandering and always new photo on your phone or came back from his regular walks. computer. During the enrollment ELIZABETH BRAVO SANTIAGO Several weeks went by and I received process you will need to provide Director of Wanderer's Safety Program a call from a very upset Mrs. J. While MedicAlert NYC with a current [email protected] at the doctor’s office, she left her picture of the member. This husband in the waiting room and picture will be provided to police It’s never too early to enroll in the asked him to stay there until she if there is a wandering incident. ® MedicAlert NYC Wanderer’s Safety completed her routine checkup. • Keep an article of the person’s Program, but it can be too late. When Mrs. J returned to the waiting worn, unwashed clothing in a During the winter I received a call from room, Mr. J was not there. She looked plastic bag to aid in finding him a Mrs. J inquiring about MedicAlert NYC in the men’s room and adjacent waiting or her with the use of dogs in the for her husband. She wanted to know rooms, but he was nowhere to be found. event that the person wanders. about the program and how it works. While we were on the phone, Mrs. J However, in order for this to be told me she regretted putting off her most effective, change the article MedicAlert NYC is an annual husband's enrollment into the program, every 30 days. subscription service that provides and that because he often misplaced his • Let neighbors and friends in your caregivers and individuals with wallet, he currently did not have any community know the person dementia the ability to create and identification on him. I reassured her that you care for is diagnosed with manage their personal health record we would assist the police department Alzheimer’s disease or a related while maintaining security, privacy, and in the search of her husband, and do dementia and has a tendency to confidentiality. Every member is given everything we could to help find him. I wander, and if they see the person a personalized stainless steel medical am sure that some of you can relate to wandering to please contact you identification bracelet that provides first putting things off until tomorrow. But immediately. responders with critical information sometimes tomorrow can be too late. regarding medical conditions or There is a fee to enroll. But thanks to the any life-threatening allergies, as A person diagnosed with Alzheimer’s generosity of City Council members, the well as access to MedicAlert’s disease or a related dementia Schnurmacher Foundation, the Helen J. 24/7 emergency hotline number. should always have some form of identification on them. Staying safe Hoffritz Charitable Trust, the Warner Foundation and other donors, we can Alzheimer’s disease destroys brain becomes increasingly important provide enrollment scholarships, so cells which are responsible for as the disease progresses and the no New Yorker is turned away because memory, thinking, and behavior. Due person’s abilities begin to change. of inability to pay. Please make the to these changes, a person living with The MedicAlert bracelet contains vital call or visit our website to find out Alzheimer’s or a related dementia identification information, and is also more about this lifesaving program. can become disoriented in familiar difficult for a person to take off on their

surroundings and get lost at any own. Here are some steps you can take to Mr. J. was found and safely returned home, time. We know that six out of ten help you protect the person you care for: and Mrs. J. enrolled him in MedicAlert people will wander and become lost. NYC the very next day. She didn’t want • Please visit caringkindnyc.org/ another wandering incident without the Since a wandering incident can wandersafety or call our 24-hour protection that the program provides. occur at any stage of the disease, as a Helpine at 646-744-2900 to enroll. precaution I told Mrs. J it’s never too early to enroll Mr. J into the MedicAlert • Keep a record of the member’s NYC and become prepared in the identification number and the event that he wandered. I offered to 1-800-625-3780 24-hour hotline enroll her husband over the phone. number.

10 24-Hour Helpline 646-744-2900 Support Groups

Support Group Leader Appreciation Breakfast

ABIGAIL NATHANSON Director of Support Groups [email protected] In my support group, a new member had been struggling with caregiving on her own for years. She shared at the end of her first meeting that Support group leaders enjoyed music by a jazz trio. hearing from the long-standing group members gave her a lot of hope to know that she can survive this and that there are people who will help her do so. Every year, the Support Group Program helps to facilitate over 2,300 caregiver support group sessions across the five boroughs, with hopeful moments like these happening every day. I am so grateful to the 80-plus volunteers and partners in our program who help to make it happen.

CaringKind is proud to support the thousands of hours of work that our volunteers and co-affiliated agencies Above: Long-time support group leaders provide, with training, supervision, June Aaronson and Ginny Abrams. referrals and ongoing guidance. One Right: Self-care gifts included a meditation of the most fun ways we try to give CD and mindfulness coloring book with back is with our annual Support Group colored pencils. Leaders Appreciation Breakfast. This year, we had a beautifully catered breakfast on June 3 at our Program Center, with speeches, gifts and a performance by a jazz trio that had our volunteers tapping their toes! This year's event was generously funded by the Junior Committee. We cannot thank them enough for their support.

If you’re interested in learning more about joining a support group or becoming a support group leader, please Left: Jed A. Levine enjoys a laugh with support group leader Dasha Kiper. give us a call on our 24-hour Helpline at Right: Lou-Ellen Barkan shares her own experiences and thanks support group leaders 646-744-2900. We’d love to talk to you. for their invaluable work.

caringkindnyc.org 11 News You Can Use

Driving and light, determining when to make a left crucial is identifying other sources turn, and allowing emergency vehicles of transportation, such as buses, Dementia to have the right of way. Multitasking, taxis, or senior center vans, that the visuospatial awareness, and reaction person can utilize. This maximizes the times are all impaired for persons with ability to still travel without having to dementia, and to complicate matters exclusively rely on another person. further, a person with dementia becomes less aware over time that When a person with dementia does these skills are becoming compromised. not recognize his or her deficits, the conversation can be much more ANNE M. FOERG All of these factors make it unsafe for challenging. At this juncture, the Director of Social Work [email protected] a person with dementia to continue intervention of a professional may to drive. Therefore, it is best to start be useful, as a person may be more planning how and when this transition accepting of what a doctor or social Driving—it is the ultimate symbol of from driver to passenger should occur worker suggests than that of his or her independence in American culture. As as early in the process as possible, in a spouse or adult child. Some doctors may such, having to stop driving can be a manner that balances the independence “prescribe” the person stop driving or devastating loss. Not only can it interfere and safety of the person with dementia suggest the individual undergo a driving with our ability to do the things we need as well as the safety of others. evaluation, a comprehensive assessment to do, such as work, shop, worship, of the individual’s visual, perceptual, and socialize, it represents losing the Problems with driving can be an early cognitive and physical abilities, as well freedom to choose what we do and when warning sign of cognitive issues, so as a road test, if appropriate. Taking we do it. A person who is used to being if an individual begins to experience away a person’s keys, disabling or selling in the driver’s seat, both literally and difficulty with any of the a vehicle, or alerting figuratively, is now often at the mercy aforementioned driving- the Department of of others to meet his or her needs. Many related tasks, a medical Motor Vehicles to an who have had to stop driving describe evaluation should be individual’s diagnosis a feeling of profound powerlessness. scheduled immediately, with the goal of having especially if problems his or her license Yet, the reality is that each person exist with memory and revoked are options that diagnosed with an irreversible form of thinking in other areas of should only be utilized dementia must stop driving at some functioning. However, if as a last resort, because point, as the progressive nature of the dementia diagnosis it can preclude the the condition will render the brain has been made, it is best person’s involvement, unable to carry out the myriad tasks for a trusted individual, exacerbating the required to safely operate a vehicle. such as a friend, family member, or already present feelings of losing A common misconception is that doctor, to begin the conversation about autonomy and control. people with dementia can continue developing a plan to taper driving with to drive as long as they remember the eventual goal of stopping altogether. As with every other element of where they are traveling or if they dealing with dementia, it is not easy have someone to navigate for them. Often, individuals with dementia to strike the perfect balance between recognize that some things have become supporting a person’s independence However, driving requires much more more difficult, such as driving on busy and safety when it comes to driving. than memory. One must manage highways or at night, and they will be Each situation is unique and requires multiple tasks at the same time, willing to avoid those situations. They a thoughtful weighing of all the including pressing the gas pedal, turning should be assisted in identifying other options and implications. As always, the steering wheel, and scanning the sources of support that alleviate the CaringKind is here to help. Please call environment for potential hazards. One need to drive as much, such as grocery our 24-hour Helpline at 646-744-2900 must possess the cognitive capacity and medication delivery services, to speak with one of our professional to appropriately judge situations and or a friend or family member who is staff about the issues you are facing react to them in a rapid manner, such willing to drive them to social events related to dementia and driving. as responding to a changing traffic and important appointments. Equally

12 24-Hour Helpline 646-744-2900 I loved to drive and I was a good driver. Then came the diagnosis of MCI and a meeting with someone from CaringKind I went to park my car in front of my who suggested that I stop apartment, which I’d done hundreds driving. Because I wanted of times, but this time I drove over my loved ones to be safe and the curb, sidewalk, knocked down a feared a lawsuit as a result of small tree, and ran into a neighboring a potential accident, I stopped building. I shudder to think what might driving at that point. have happened if a child had been -T., age 72 walking there! At the time, I did not know I had early-onset Alzheimer’s. Only some years later, an MRI showed that I had several mini-strokes around that time. My advice: if you are diagnosed PLEASE DON’T DRIVE. -R., age 68

One day while looking at the trees, I heard a loud bang and realized that a red truck had been rear-ended — by ME! In my distraction, I had lost focus completely. In over 55 years of driving for work and travel, I had never had an accident. After this incident, I stopped driving — I first felt something was wrong when completely! I noticed a subtle shaking of my hands -G., age 71 while at the steering wheel and I was having problems parking. My doctor dismissed my concerns as normal. Then, one day I was driving at 65 mph and I suddenly didn't know what I was doing or where I was going. I was trembling uncontrollably. I managed to pull over safely, took lots of deep breaths, and We thank our eventually was able to focus. I have participants in the since stopped driving, and I hope that others with a diagnosis of Alzheimer's are Early Stage Center inspired by this story to do the same. Program for sharing -F., age 65 their moments when they decided to stop driving.

caringkindnyc.org 13 Palliative Care

Palliative Care Guidelines Release

ANN WYATT Residential Care Policy & Strategy Consultant [email protected]

On June 23, CaringKind hosted a breakfast to celebrate the publication of Palliative Care for People with Dementia: Why Comfort Matters in Long- Term Care, and the accomplishments of the three nursing homes that have been working to implement a palliative approach to care for people with dementia: Cobble Hill Health Center, Isabella Geriatric Center, and The New Jewish Home, Manhattan Campus. This model of care is based on the Comfort Matters® approach developed by the Beatitudes Campus in Phoenix, Arizona. Working with the homes were their hospice partners, Calvary Hospital Hospice, MJHS Hospice & Palliative Care, and Visiting Nurse Service of New York Hospice & Palliative Care.

Presentations were made by staff from each of the homes. Special guests included Donna M. Corrado, Commissioner, NYC Department for the Aging; Lilliam Barrios-Paoli, Chair, Board of Directors, NYC Health + Hospitals; Erin Fay and Elizabeth Berberian, NYS Department of Health; and several project funders, including Julio Urbina from the Fan Fox & Leslie R. Samuels Foundation, Alan Divack from the Lucius support for the project.Additional the Carter Burden Center, and the Littauer Foundation, and Hollis Holmes guests included representatives from Brookdale Center for Healthy Aging. from the United Hospital Fund, as well MFY Legal Services, the Alliance of as David Gould, formerly with the Fund. New York Family Councils, the Long- To read and download a free copy of Jose Matta, Janice Dabney and others Term Care Community Coalition, the the publication, visit caringkindnyc. represented the 1199 SEIU Training & Coalition for the Institutionalized org/palliativecare. Employment Fund and The Greater New Aged and Disabled, PHInational, York Education Fund, also sources of

14 24-Hour Helpline 646-744-2900 Dear Helpline

My father just turned sixty and recently retired. He doesn’t socialize as he did before, and I often can’t get him to go out, even to sit on a park bench. He has missed two of our lunch dates in the past three months. Recently STEPHANIE ARAGON I brought him to a gathering of his old friends. They were Director of Helpline discussing the latest crisis in the news and he just sat there [email protected] without saying anything. Afterward, he told me that he didn’t know what they had been talking about. What could be the cause of this? How should I handle these changes?

Your loving concern for your father changes you’re seeing in your father. diagnostic evaluation covers many is evident. You point out a number Consulting with his primary doctor is a aspects of health in order to rule out of things that raise red flags. Is his good place to start. If the doctor notices other illnesses and focus on what change of behavior caused by giving a significant change in your father he might be the cause or causes of your up his life’s work? What might be the might suggest further testing. There are father’s memory issues and personality reason for his lack of interest in friends diagnostic centers in each of the five changes. Medicare will pay for those and activities? Are we talking about a boroughs where Helpline Specialists over the age of 65; otherwise, other problem with his physical health, mental can refer you. There your father will insurance will be accepted. With a full health or, perhaps, both? And what be seen by a variety of specialists over evaluation you will be better able to deal role does memory play in all of this? a few visits. It would be best if you or with your father’s changes in the most another family member accompanies appropriate way. For more information A thorough medical evaluation might him, since he will be asked to give a about these resources, please call our be the best next step in order to better thorough family history. Physicians 24-hour Helpline at 646-744-2900. understand what might be causing the may request a CT scan or an MRI. The

My wife was diagnosed with Alzheimer’s disease eight years ago and has declined every year since. At this point she is bedbound and cannot speak. Sometimes she seems to be in distress, and it’s hard for me to connect with her. Is there anything I can do to try and bring her comfort?

We are so glad you reached out to us for Learn about palliative care, a type of about a referral to a palliative care support. There are many families caring medical care that focuses on relieving specialist who can assist in alleviating for someone in the later stages of the symptoms of a disease instead of trying any discomfort your wife may have. disease. As your wife is unable to speak to treat an illness. Palliative care’s main You are certainly welcome to call our and bedbound, if she seems distressed emphasis is in the quality of life of the 24-hour Helpline at 646-744-2900 and you should check for bedsores on her patient, in this case, your wife. When schedule a meeting with a social worker lower back, her elbows, and the heels you feel she may be in distress, try to discuss future plans. Encouraging of her feet. Remember it is important putting on soothing music in her room Comfort Care: A Guide for Families to change her position every few hours and sitting with her; she will feel your of People with Dementia is another and consider using a special mattress presence. You know her best, her likes great resource; you can find it on pad, such as the foam “egg crate” and dislikes. Touch is very powerful. our website or we'd be happy to send model. If she is unable to easily leave Holding her hand or brushing her hair you a copy. It is important that both the house, know that we can refer may be very comforting to her. You may you and your wife are comfortable you to doctors who make house calls. also want to speak with her physician at this important time in your lives.

caringkindnyc.org 15 CaringKind in the News

It’s clear that even though our name has changed, the news media continues to rely on CaringKind, with our three decades of experience, as an important source of information about Alzheimer’s disease, dementia and caregiving.

CaringKind was featured in an New Yorkers that, “It’s never too early controversial comedic movie about extraordinary New York Times 12-page (or too late) to talk about Alzheimer’s Ronald Reagan and Alzheimer’s disease. special supplement on Sunday, May support. Call our 24-hour Helpline. Jed was interviewed on PIX11 and CBS 1. Called “Fraying at the Edges,” the We’re here anytime you need to talk.” New York, talking about the right in-depth story by reporter N. R. way to discuss the disease in cinema. Kleinfield followed CaringKind Harry We continued to spread the word about and Jeanette Weinberg Early Stage our free programs and services with a Jed was also quoted in a crucial Center client Geri Taylor and her series of articles placed in local papers story about caring for someone with husband Jim for 20 months, providing including the New York Daily News, Alzheimer’s disease by Healthline, a an unprecedented look into the day-to- Queens Chronicle, Queens Tribune, healthcare blog whose mission is to day life of someone in the early stages Bay Ridge Courier, Brooklyn Graphic, improve health through information. of Alzheimer’s. The CaringKind staff Mill Marine Courier and Bay News. Also, Jed said, “The epidemic of Alzheimer’s worked hard to supply the reporter congratulations to Cheshire Schanker, disease is on its way to being the greatest with everything he needed to produce Queens Outreach Social Worker, for healthcare crisis in the nation’s history.” a deeply emotional article that featured starring in an important public service interviews with Lou-Ellen Barkan, as announcement about our services that And here is a piece of great news— well as Lauren Volkmer and Maria aired on Queens Public Television. Lou-Ellen has been invited by a Mursch, the Director and Manager of series of local newspapers, including the Early Stage Center, respectively. CaringKind’s annual TackleALZ NYC Manhattan Express, Chelsea Now, The article, which was also featured game was a great success! The game Bronx Times, Caribbean Life, East on The New York Times’ social media was featured on NY1, with Roger Villager, The Villager, Times Ledger, platforms, called attention to the Clark interviewing our own Candace New York Parenting, Brooklyn Paper and critical work we do at CaringKind, Douglas, Director of Constituent Downtown Express, to write a monthly and how dementia impacts the entire Events, as well as players from the column called “Care Chronicle,” which family. CaringKind is very grateful BruCrew and Blondetourage teams. explores issues confronted by people to the Taylors for telling their story living with dementia and those who with such bravery, grace, and dignity. Lou-Ellen continues to make news. She care for them. The first of this series, was honored with the Above & Beyond which was published in June, introduced CaringKind’s stunning subway ad award by City & State, an important readers to Alzheimer’s and dementia. Be campaign was unveiled earlier this news source devoted to covering on the lookout for her next installment! year and grabbed the attention of government, politics, and nonprofits several media outlets, including in New York State. She was recognized NBC New York and The Jewish Voice as one of the 25 most remarkable women newspaper. Through a series of five serving in nonprofit organizations. real-life scenarios, the ad campaign, Leading up to the award ceremony, called “That Moment When…,” shines City & State published a Q&A with a light on situations and behaviors Lou-Ellen, who gave advice to caregivers that many caregivers now recognize saying, “You can’t take care of someone as the moments when they first realized else unless you take care of yourself.” something might be wrong with a family Jed Levine was front and center member or friend. The ads advise in media stories surrounding the

16 24-Hour Helpline 646-744-2900 Charles Evans Lecture

The Forgetting: with his eminent acting career, Mr. Pierce is a staunch advocate for 15 Years Later Alzheimer’s care and research and received the 2010 Tony Awards’ By James Campbell Isabelle Stevenson Award for his work.

In the 2004 filmThe Forgetting, author David Shenk is the award-winning and David Shenk boldly declares that “We bestselling author of The Forgetting. Mr. are at the end stage of the war against Shenk is a spokesperson on Alzheimer’s Alzheimer’s.” While progress has been and has advised the President’s Council robust, this is not the case today. What on Bioethics on dementia-related issues. is certain is that until a cure is found, He is a special advisor to the Cure caregivers will continue to play a critical Alzheimer’s Fund and he is the creator of role in caring for persons with the the Living With Alzheimer’s film project. disease. On May 2, CaringKind brought a panel of experts, Mr. Shenk included, Rachael Bachleda came to CaringKind Jed A. Levine moderates the discussion between actor and Alzheimer's advocate David Hyde to the Times Center in New York City ten years ago when her mother was diagnosed with Alzheimer’s. She is Pierce, author David Shenk, and caregiver for A Conversation with David Hyde Rachael Bachleda. Pierce & David Shenk: The Forgetting a member of CaringKind’s Junior 15 Years Later, the 4th Annual Charles Committee and is a five-time participant Alzheimer’s, not dying of it, essentially ® Evans Lecture on the Art and Science on the Athletes to End Alzheimer’s saying “don’t count me out yet.” of Caregiving. The panel discussion New York City Marathon team. provided keen insight into caregiving’s Ms. Bachleda intimately described history and scale, from ancient times to Mr. Shenk began by reflecting on a the personal perspective, sharing the the present, from personal experiences conversation he overheard that led details of her father’s transformation to national and global policy. him to research the long history of into a caregiver, as well as her own. Alzheimer’s and “tell the story of the In particular she highlighted the Following welcoming remarks from disease as you would the biography of importance of support groups in CaringKind’s Board Co-Chair Benjamin a person.” This story, said Mr. Pierce, helping her cope with the “unique Jenkins, Lou-Ellen Barkan stressed the “is like the disease itself,” in that “it experiences” that caregivers face. organization’s role as a place “that sees is intensely personal and at the same individuals and not a disease.” Jed A. time the battle against it is global.” Alice Shure and Bonnie Pfeiffer- Levine guided the panel of advocates Evans, trustees of the Charles Evans and experts: David Hyde Pierce, David Hyde Pierce’s work with the Foundation, stated during their opening David Shenk, and Rachael Bachleda. National Alzheimer’s Project helped to remarks that though the stigma around identify a major victory of this global Alzheimer’s has faded, the “around the David Hyde Pierce is a Tony and battle: people are confident in voicing clock, demanding, and mostly thankless” Emmy Award-winning actor. Along the idea that they are living with role of the caregiver remains. The question is what kind of person does it take to fill this role? Ms. Barkan summed it up neatly: “It takes the courageous kind, it takes the listening kind, it takes the loving kind, it takes the caring kind.”

James Campbell is a freelance writer based in Brooklyn. He holds an MA in International Affairs from The New School and has written for various academic and human rights organizations, including the Anti-Trafficking Review.

From Left: Rachael Bachleda, Jed A. Levine, Lou-Ellen Barkan, David Shenk, Bonnie Pfeiffer-Evans, David Hyde Pierce, Alice Shure

caringkindnyc.org 17 Development Update

every year we have to raise an increasing amount of money to meet our operating Ways to Give

budget. For fiscal year 2017, which started Giving by Check July 1, that figure is over $10 million. Please make checks payable to CaringKind. For your convenience, a self-addressed postage paid envelope has been provided CAROL BERNE We are not a college, university, in this newsletter. Senior Vice President of Development or medical center that is able to [email protected] augment philanthropy with tuition Online/Credit Card Visit www.caringkindnyc.org and click on and hospital fees, patents and licenses Donate or call 646-744-2908 or 2927. We on research advances, and numerous As I write this report I am reminded accept MasterCard, Visa, and American other financial revenue streams. Express. that we are six months along as an We are 100% dependent on you. independent New York City charity Appreciated Securities focused on care and support for Gifts such as stocks or bonds may offer You generously supported our Spring substantial tax advantages. Please speak individuals and families affected Mother’s and Father’s Day Campaign, to your tax advisor. by Alzheimer’s disease or a related which this year raised over $128,365 dementia. Sometimes I think we have Bequests and represented a remarkable 320% By remembering CaringKind in your will, been a stand-alone charity for years and increase over the year before. You you can have a significant impact on at other times it seems that we are just improving the quality of care for those supported special programs, including starting on our journey. What I do know affected by Alzheimer’s disease. Your our palliative care initiative which is bequest may have estate tax planning and value is the singular dedication and transforming how care is provided to benefits as well. The following is sample commitment of our Board, our staff and bequest language for discussion with your residents of nursing homes who have the donor community who have advised attorney: late-stage dementia. We now move us, advocated for us, and endorsed and I, ______(first and last name, city, forward to implementing this model of state, zip), give, devise and bequeath to supported our independence. The CaringKind (or Alzheimer's Disease and comfort care in other settings. And it motivation behind all of this has been to Related Disorders, New York City, Inc.) is you who have left us in your estate ensure that there is a viable resource in with offices located at 360 Lexington plans to make sure that we can plan Avenue, 4th Floor, New York, New York New York City, staffed by professionals ahead, understanding that Alzheimer’s 10017, (insert written amount of gift, with extensive expertise in all facets of percentage of the estate, or residuary of is not going away anytime soon. dementia care, to care for New Yorkers estate, or description of property) to be used for (insert “its unrestricted use” or when they have no place else to turn. So in keeping with the theme of this name of CaringKind program). newsletter, it is never too early or too late Alzheimer’s can be very lonely and Life Insurance and Retirement Plans to donate: to honor someone important in CaringKind can be named a beneficiary of isolating. And at some point, it is not your life, to support a program or service your retirement plan or insurance policy. medical care that is the answer. It is that has meaning to you, to name a room social services that will lead the way Donor Advised Funds at CaringKind, to support our upcoming If you have established a donor advised to ensuring a better quality of care for CaringKind Alzheimer’s Walk, or to make fund through another organization (e.g., the person with the disease and a much community foundation, investment firm) a planned gift to help us in the future. better quality of life for the caregiver. you may recommend the award of a grant We count on you. As always, please But this care comes with a price. For us to CaringKind. Please check the guidelines contact me directly at 646-744-2905 or pertaining to your donor advised fund. to keep our programs and services free [email protected] if you of charge and to be able to continue to Corporate Giving would like more information or would meet the needs of the ever-growing Payroll deductions, matching gifts, and like to discuss a gift. Thank you. event sponsorships are ways to support New York City Alzheimer’s community, CaringKind.

100% of your donation supports New York CaringKind is a tax-exempt organization under Know Your Charity City individuals and families affected by an Section 501(c)(3) of the Internal Revenue Code The following organizations Alzheimer’s or dementia diagnosis. (Tax ID number 13-3277408) and your gifts are tax ARE NOT affiliated with CaringKind: • Alzheimer’s Association deductible to the full extent of the law. Please contact Carol Berne at 646-744- • Alzheimer's Association, New York City Chapter • Alzheimer's Disease Resource Center (ADRC) 2905 or [email protected] if you • Alzheimer's Drug Discovery Foundation would like additional information. CaringKind meets the Better Business • Alzheimer’s Foundation of America (AFA) Bureau Wise Giving Alliance Standards • Bright Focus Foundation for Charity Accountability. • Long Island Alzheimer’s Foundation (LIAF) • Staten Island Alzheimer’s Foundation (SIAF)

18 24-Hour Helpline 646-744-2900 Planned Giving

Planning Today for Tomorrow

When CaringKind expanded to the meaningful impact helping others know that in its absence, the best third floor in March 2013 to build our who are heartbreakingly affected by course of treatment is good care. Your Program Center for Education, and a diagnosis of Alzheimer’s disease or contribution enables us to plan ahead Training, and the Harry and Jeanette a related dementia. For more than 30 so that we can develop innovative, Weinberg Early Stage Center, we were years we have been a leader in dementia creative, and leading-edge caregiving able to do so because of the generosity care, setting the gold standard for care. initiatives to ensure that caregivers of individuals who had planned ahead today and tomorrow have a place to and left us in their estate plans. The Though we all hope for a cure or an turn for the best in dementia care. bequests that we receive are from effective treatment or therapy, we grateful clients who wish to give Gifts of any size are appreciated back in appreciation for the support and every single gift is important to and help they receive during the helping us. Please see the Ways to very difficult journey of caring for, or For more than 30 Give section on bequests on page knowing, an individual with dementia. 18 for further information or please years, we have contact Carol Berne at 646-744- Planned giving is a way to support been a leader in 2905 or [email protected]. CaringKind through your will, a dementia care, retirement account, a trust, or setting the gold other vehicles to make a charitable standard. contribution after your death. Through estate planning, you can make a

Know Your Charity

The following organizations ARE NOT affiliated with CaringKind:

• Alzheimer's Association • Alzheimer's Foundation of • Alzheimer's Association, New York America (AFA) City Chapter • Bright Focus Foundation • Alzheimer's Disease Resource • Long Island Alzheimer's Center (ADRC) Foundation (LIAF) • Alzheimer's Drug Discovery • Staten Island Alzheimer's Foundation Foundation (SIAF)

caringkindnyc.org 19 2016 Forget -Me-Not Gala

Board member and Gala Chair Jon Henes, former NHL All-Star and Emmy Award winning broadcast analyst Ron Duguay and Eric Friedman, Board members Lori Oscher Gala MC Nigel Barker, photographer and TV personality Friedman and Linda LaGorga

Young Leadership Honoree and Junior Creative Leadership Honorees Sharon Washington, Jennifer Garvey-Blackwell Committee President Laurel Crosby and and Susan Stroman, and David Hyde Pierce Eric Burghoffer

Members of the CaringKind Board of Directors Lou-Ellen Barkan (center left) is joined by director Susan Stroman (third from left) and DOT cast members (from far left) Colin Hanlon, Sharon Washington, Marjorie Johnson, Stephen Moore, Libya Pugh, and Finnerty Steeves 20 24-Hour Helpline 646-744-2900 Board Co-Chair John Latham and Susan Stroman and David Hyde Pierce Ron Duguay and Dr. Max Gomez Kimberly Latham

John Fiore and Board member Steve Maggio, Board member Stephen E. Boxer, Board Co-Chair Stephen Casper and Marianne Dziuba-Fiore and Carol Berne Jed A. Levine

Dr. Thomas Wisniewski, Dr. Warachal E. Faison, Dr. Mary Sano, Dr. Steven Board Co-Chairs Stephen Casper and John Latham, Board member and Gala H. Ferris, Dr. Peter Davies, and Dr. Mary Mittelman Chair Jon Henes, and Board Co-Chair Benjamin Jenkins

Karen Ziman, Ken Ziman, and Lori Oscher Board member David Weinberg and Board member Jim Lavelle (back row, right) with family and Friedman Samara Weinberg friends caringkindnyc.org 21 Every Chair Tells a Story Reserve Your Personalized Place in the Park

Pay tribute to someone special in your life with a personalized Bryant Park “Memory Chair.” Today, there are nearly 400 Memory Chairs in Bryant Park (located adjacent to the New York Public Library on 42nd Street and 5th Avenue), and every chair tells a story. The Chairs have been dedicated to mothers and fathers, sisters and brothers, husbands and wives, and partners and friends – all of whom have been impacted by Alzheimer’s disease or a related dementia.

The Bryant Park Memory Chair program is an opportunity to claim a special place in the heart of one of New York City’s most celebrated parks, while honoring a loved one with dementia, thanking an extraordinary caregiver, or marking a special milestone in your life.

Your personalized plaque will be mounted on one of the chairs in Bryant Park, and inscribed with your personal message and the CaringKind logo. Not only will you contribute to the legacy of a loved one, but your donation will support the work of CaringKind, raise awareness about one of the most devastating diseases of our time, and support the ongoing efforts to maintain the beauty of Bryant Park.

For more information contact Crissy Vicendese at [email protected] or 646-744-2927. www.caringkindnyc.org/bryantpark

22 24-Hour Helpline 646-744-2900 Save the Date! 29th Annual Research Meeting Traumatic Brain Injury: Prevention, Treatment, and the Consequences

Date: Tuesday, October 18, 2016 The Times Center Place: 242 West 41st Street New York City Check in: 5:30 p.m. Time: Program: 6:00 p.m. Reception: 7:30 p.m.

For more information or to RSVP please visit www.caringkindnyc.org/AnnualMeeting or call Crissy Vicendese at 646-744-2927 This event is free of charge, and open to the public Moderated by Dr. Max Gomez, CBS 2 Medical Reporter Panelists: Sam Gandy, MD, PhD Mount Sinai Endowed Chair of Alzheimer’s Disease Research, Professor of Neurology and Psychiatry, Director of the Center for Cognitive Health and NFL Neurological Care.

Robert A. Stern, MD Professor of Neurology, Neurosurgery, and Anatomy and Neurobiology at Boston University School of Medicine; Director of the Clinical Core of the BU Alzheimer’s Disease Center; and Director of Clinical Research for the BU Chronic Traumatic Encephalopathy (CTE) Center.

The Annual Meeting is generously supported by Bill and Jane Brachfeld caringkindnyc.org 23 Together We Care Finding Home Care

dementia care experts, Together • Degrees & certifications, We Care is the only resource you including the institution from need. Visit TogetherWeCare.com to which they were awarded. create your free account and begin • Availability options, including your search today. After you have the days of the week they are MATT KUDISH created your free account, you can: Senior Vice President of Caregiver Services available for work, as well as [email protected] whether they are looking for Post job listings. Family members can part-time, full-time, or live-in create a job listing for the aides on the site After an Alzheimer's or dementia employment. to view and respond to. Take advantage diagnosis, it's never too early to consider of this opportunity to describe precisely • Transportation capabilities, long term care options, including home what you’re looking for and you need and if they have a valid driver's care and hiring an aide. Together We in a caregiver, and let our graduates license. Care™ is a website that was created contact you to learn more. Job listings by CaringKind as a way to bridge the • Location, and if they are able to are only viewable by graduates of gap between graduates of CaringKind's work in the five boroughs, New our training program and are not nationally recognized Dementia Care Jersey, Westchester, Long Island, able to be seen by the general public. Training for Professional Caregivers and Connecticut. program and family members seeking Browse or search profiles. Every to hire aides trained in dementia care. profile on the website is a graduate of If you are looking to hire an aide CaringKind's dementia care training trained by New York City's leading program. Profiles include the aides':

Looking to hire private home care workers?

www.TogetherWeCare.com can help in your search. Create a free account, post an ad, and browse profiles.

Aides are professionally trained by CaringKind* - The Heart of Alzheimer’s Caregiving. Together We Care™ Connecting trained home care workers with the families who need them

*Formerly known as the Alzheimer’s Association, New York City Chapter

24 24-Hour Helpline 646-744-2900 Choosing a Nursing Home

It's Never Too Early to Consider Nursing Home Options

There are many things to consider when while others may require complete deciding on a new home for the person custodial care. For instance, if with dementia. It is important to look someone requires significant beyond the physical characteristics medical care, you may want to look of a facility and to place emphasis for a facility that is affiliated with a AMY TORRES on the quality of care provided to hospital and is accustomed to caring Director of Training residents. If possible, look for a home for people with high medical needs. [email protected] that you feel will be responsive In this instance, it is more important to your requests, and will try to to find a facility that can properly If a person with dementia’s needs can accommodate the person’s daily routine. care for the person with dementia, no longer be met safely at home, or rather than a facility that has many if they require rehabilitative services When you are looking for a new home, activities or a pleasant outside space. after a hospitalization, it may be time you may notice facilities referring to to consider a move to a long term a care perspective called “person- • Ensure Language and Cultural care facility. It is best if you begin centered care” or “culture change.” Needs Can Be Met. If the person looking for a long term care facility These terms refer to a movement which with dementia has specific language, before the person with dementia aims to make long term care facilities religious or dietary needs, it is actually needs it, as the process more home-like and to encourage important to inquire whether often takes longer than expected. resident choice and respect of resident the facility can accommodate routine. These facilities will likely be those needs prior to placement. In order to be eligible for nursing more open to individual input from home care, the person with dementia residents, family members, and friends The Department of Health does must require 24-hour skilled nursing when responding to daily care needs. not currently have any regulations or custodial care. A person requiring determining the definition of a “dementia custodial care needs assistance with Taking the following steps will help you unit.” Although you may find that facilities www.TogetherWeCare.com daily activities such as eating, dressing, decide which long term care facility is advertise dementia units, without bathing, ambulating, and medication the right fit for the person with dementia: regulations this phrase is not necessarily can help in your search. management. Individuals applying helpful. It may be more important from hospitals generally have higher • Visit Several Homes. When taking to find a facility providing quality Create a free account, post an ad, admission priority because they typically a tour, be sure you are shown a care to other residents with similar have higher skilled nursing needs. long term care floor. Facility staff needs to the person with dementia. and browse profiles. Skilled care is provided by licensed may show visitors the sub-acute or professionals such as a registered rehabilitative floors, which may be Caregivers often experience mixed nurse. Examples of skilled care include better staffed and furnished. Ensure emotions surrounding the decision to intravenous injections, physical therapy, the facility is clean and odor free. find a new home for the person for whom and medication administration. they have been caring. It is important to • Choose a Place Convenient to remember that moving someone to a Nursing homes use an assessment tool You and Other Visitors. Visit long term care facility does not mean called the Patient Review Instrument frequently. The more visitors the that you have failed in your caregiving (PRI), which is completed by a doctor or person with dementia has, the efforts. Trust that you are making the registered nurse to evaluate someone more likely it is that issues with best decisions for the person and for for admission. A family member should care will be noticed and addressed. yourself. Although the transition to a long be present during the evaluation to term care facility may be emotionally report on one’s functioning and the • Meet the Person with Dementia’s challenging, you can continue to have level of care required. It is common Care Needs, Not Your Personal a rich relationship with that person. for someone to spend months on a Preferences. People with dementia waiting list if he or she is moving from have very different care needs. Some his or her home into a nursing home. may have high skilled nursing needs

caringkindnyc.org 25 Advance Directives

Carry an Umbrella Important Documents

By Daniel G. Fish, Esq. POWER OF ATTORNEY A power of attorney (POA) allows you (the “principal”) to designate one or more persons ("agent(s)" or "attorney(s)- It's important to overcome the in-fact") to manage your affairs. The authority of the resistance to planning in advance. agent(s) is sweeping; only the most trustworthy individual(s) should be selected. If you select multiple agents, you must decide whether to Why is it that many people do not take allow each agent to act independently or to require that all of the agents act the simple precaution of signing legal together. It is also possible to name an agent to serve if one of the originally documents to protect themselves in the named agents is unable to serve (called a "successor agent") and to name event they become unable to manage an agent to act in the future (called the "springing power of attorney"). The their affairs? There is a great deal of principal does not lose the power to act or manage his or her finances by reluctance to think about illness and naming an agent(s), you are simply authorizing someone to act with you. its possible consequences. Rational thinking gives way to anxiety, and The power of attorney can be limited or general. A limited POA anxiety gives way to inaction. This is the restricts the areas in which the agent(s) can act. The general POA same as thinking “If I do not bring an allows the agent(s) to make all financial decisions that the principal umbrella, then it will not rain.” The best could make him- or herself, if he or she was not incapacitated. A approach is the Boy Scout motto: “Hope durable POA remains in effect even if you lose mental capacity. for the best and prepare for the worst.” The good news is that the steps to take Often, financial institutions will refuse to recognize the power of in this regard are straightforward, easy attorney. New York State statute requires financial institutions to accept to implement, and very inexpensive. a properly drawn POA; many financial institutions and government agencies have their own POA form and will not accept the general POA. Advance directives allow you to name a person to help if you cannot make LIVING WILL financial and medical decisions on your A living will describes the kind of health care you would desire own. They must be signed while you if you were seriously ill, particularly in situations where heroic are alert and understand them. Some measures would be considered. The living will does not appoint people think that advance directives are an agent, it simply informs your family and health care providers only for those who are facing an illness about the type of care that you want at the end of life. such as Alzheimer’s disease. The truth is that all individuals over the age of 18 should plan for the possibility that HEALTH CARE PROXY they may be disabled (temporarily or A health care proxy allows you (the "principal") to appoint an agent to direct permanently) and unable to manage medical treatment if you become incapacitated. You can only designate one their finances and their health. agent under the health care proxy to avoid confusion, but you can name an alternate agent. The health care proxy takes effect when a physician has Daniel G. Fish is a partner with determined that the principal cannot make decisions for her- or himself. McLaughlin & Stern, LLP and a past The standard health care proxy allows the agent to make all medical president of the National Academy of decisions, with the exception of artificial nutrition and hydration. If you wish Elder Law Attorneys. your agent to make decisions regarding these matters, you must specify this in the document. After you sign the health care proxy in front of two witnesses, you should submit a copy to each of your health care providers. Learn more about these tools by attending CaringKind's GUARDIANSHIP Legal & Financial If no advance directives have been made and you can no longer Seminar. To register, call our Helpline at manage your affairs, it may be necessary to seek a court-appointed 646-744-2900. guardian. However, as this is a costly and time-consuming option, it is recommended that all adult individuals complete advance directives.

26 24-Hour Helpline 646-744-2900 connect2culture

It's Never Too Early To connect2culture®

to give support and education to is exclusive for the event. Participants existing cultural programs for people are personally greeted and small groups with dementia and their caregivers, are formed. In addition to having to initiate and assist in creating expertise in a particular subject matter, NANCY LEE HENDLEY additional cultural programs in various educators are trained in dementia care Former Manager of connect2culture® venues throughout the five boroughs, and have a good understanding of the and to assist caregivers in finding type of support that persons with appropriate activities for themselves dementia require. A limited number Suppose that you and a person with and the person for whom they care. of works are presented and each dementia could attend a concert at session is developed specifically to Lincoln Center for the Performing In 2006 the Museum of Modern Art engage persons with dementia with an Arts, view art at The Met Cloisters, piloted Meet Me at MoMA, which approach that encourages conversation examine artifacts at the Intrepid Sea, brought persons with memory loss and input from every participant. Many Air & Space Museum, or pot a plant and their caregivers to the museum programs offer tactile explorations and at the Brooklyn Botanic Garden? to view and discuss artworks in a safe, some offer an art making component. What might that experience look like? supportive group setting. Since then, a All of the programs are free of charge. multitude of new and diverse offerings After a diagnosis of dementia, it often have launched and ongoing programs It is possible to envision these becomes increasingly difficult for the exist throughout the city. The Arts and events; they are already in progress! person with dementia and for the Minds organization offers programs at I invite you to explore these valuable caregiver to enjoy social outings. As the The Studio Museum in Harlem, The New resources. We at connect2culture are illness makes its way to the center of our York Historical Society, and El Museo dedicated to continuing to provide lives, a lot of other living gets crowded del Barrio (the first offering of its kind opportunities for you. Please feel free out. For the person with dementia, in Spanish in the city). Lincoln Center to call with your questions, concerns, trying to interpret environmental piloted two highly successful concerts and suggestions. For a complete list of cues, finding just the right thought to this spring with six additional concerts connect2culture offerings please visit contribute, determining the proper on the schedule for next season. The our website caringkindnyc.org or call way to interact, and even following Jewish Museum, The American Museum the 24-hour Helpline at 646-744-2900. a conversation can be frustrating or of Folk Art, The Metropolitan Museum discouraging. For the caregiver, concern of Art and The Met Cloisters provide After ten years at CaringKind, as both a over how the person with dementia will outstanding, engaging programs. There Dementia Care Trainer and the Manager respond, wondering how the person are opportunities to sing with The of connect2culture, Nancy Lee Hendley will take to the activity, and concern Unforgettables, to participate in a Social has left CaringKind to pursue other about how others might react can make Tea Dance with Rhythm Break Cares in opportunities. We thank her for her socializing a challenge. As a result we Manhattan, and to Dance Like Nobody’s many years of dedicated service and find ourselves with less and less desire to Watching at the Brooklyn Library. The wish her the best in her future endeavors. do things that used to bring us pleasure. Brooklyn Museum offers an art viewing Unfortunately, this kind of living keeps program. A pilot program at the Brooklyn We also welcome Meredith Wong as us from enjoying ourselves and tends to Botanic Garden has brought gardening the new Manager of connect2culture. be a cause of distress and depression. into the connect2culture scope. Meredith brings a wealth of experience with museum education and enthusiasm connect2culture® at CaringKind is a Every program includes key components for developing access programs to program supported by a generous grant that help to ensure a successful outing. the position and we are excited to from the New York State Department of They are scheduled at an optimal time of have her on board. You can reach Health to enhance the lives of persons the day, and many of them occur when her at [email protected]. with dementia and their caregivers. The the venue is closed to the public or set goals of connect2culture are threefold: in a space with comfortable seating that

caringkindnyc.org 27 Junior Committee

A Caregiver's course on how caregiving Journey affects a caregiver, and his was an in-person session By Jessica Gonzalez with a researcher from the study, operated out Junior Committee Social of Columbia University, Media Chair which was designed to help Latino families In hindsight, we noticed my mother’s understand how the symptoms years ago. She began telling disease would affect their a story that was impractical and loved one and learn how implausible. The story involved her to keep their loved one coming with me to my high school comfortable and engaged friend’s house traveling by bus, but my as the disease progresses. mom hated public transit with a passion. Over time other symptoms manifested: In January 2015, I found forgetting how to get somewhere, the Junior Committee. forgetting to cook dinner, forgetting What surprised and Jessica crosses the finish line at the 2016 TD Five Boro Bike the zip code we’ve had for over 30 years. saddened me was seeing Tour as a member of team Athletes to End Alzheimer's. how many young people Finally in 2014, after asking the doctor had already lost a parent to test her for years, we finally went to Alzheimer’s or dementia and how Throughout this long goodbye, one with her to the appointment. She failed many were in the process of losing person that should not be forgotten is her cognitive test completely, and we them. Having already used the services my mother and her personality. She still now had a name for her condition: of CaringKind, I knew that whatever has her spirit that makes her a unique Alzheimer’s. After a confirmation from fundraising events we did or advocacy individual, and while she cannot perform a neurologist, we were sent home to trips we took actually impacted lives. many activities independently, she still live life without any recommendations, That spring I accompanied CaringKind has her creativity. I started an Instagram not even an information packet. staff, caregivers, and three other Junior account, @hildaalznails, just to keep up Committee members to Washington, D.C. with her nail decorations, but it has The first time I called CaringKind (then to advocate for more fundraising dollars evolved into so much more. Through the NYC Chapter of the Alzheimer’s to meet federally identified goals. It was Instagram we tell the story of her journey, Association), my mom had yelled at us an intense experience, seeing so many both the good and the bad. We have also and stormed out of the house. That day, affected caregivers and contemplating joined a larger online community that is through the Helpline, I signed up for my the impact this disease had on everyone raising awareness about Alzheimer’s and 10-hour Family Caregiver Workshop. I around me. The emotional toll of this dementia and breaking down the walls of was the youngest person in my class, disease is enormous, but the full silence that have surrounded this disease and only one of two participants in the economic and financial impact of for so long. CaringKind is a strong group who were caring for a parent. It this disease has not reached its peak. advocate in this fight, helping to support was a wonderful introduction to the those afflicted with these diseases nuts and bolts of a disease that would On May 1, 2016, I rode the TD Five Boro and those who are caring for them. become a dominating force in my life. Bike Tour in support of CaringKind. The temperature reached a high of If you’re interested in learning more After I tested the waters, my father 50 degrees and rained the entire about the Junior Committee please completed the same workshop with 40 miles. I finished those 40 miles visit our website at caringkindnyc.org/ CaringKind at a location in Brooklyn. frozen and soaked, but happy to have juniorcommittee. If you or someone you Together, with our newfound knowledge, met my fundraising goals and know know would like to join the committee we enrolled in two studies that we found that for over 40 miles, I helped raise please email [email protected]. through CaringKind. Mine was an online awareness of CaringKind and its mission.

28 24-Hour Helpline 646-744-2900 You have questions. We have answers.

Since the launch of our new brand in March we have received all sorts of questions and feedback—and we want to hear more!

Your inquiries and opinions are very important to us here at CaringKind. With that being said, we are excited to introduce our new web-based Question & Feedback form. If you are interested in learning more about our new brand or have questions about We'd love to any of our programs and services visit us at caringkindnyc.org/feedback hear from you! and complete the online form.

Send us a note, show us some love, let us know about your recent experience, ask a question—just reach out. We’d love to hear from you! Who knows, your question might appear in the next newsletter!

caringkindnyc.org 29 Athletes to End Alzheimer's

April Showers Bring May...

The 2016 TackleALZ NYC players and coaches CANDACE DOUGLAS Director of Constituent Events they were proud to lend their bodies an impressive fashion to score multiple [email protected] and voices to the caregiver mission. touchdowns, giving them the lead and final game victory score of 47-20. But ...Athletes to End Alzheimer’s® all-stars! Fast forward just two short weeks, and the most important score of the night In May, between the TD Five Boro Bike we would again be under the threat of was the one shared by the nearly 100 Tour and TackleALZ NYC, our athletes thunderstorms while getting ready for participants from both teams: over raised over $200,000 to support our another great night of flag football on $190,000 raised to tackle Alzheimer’s. programs and services while proudly Roosevelt Island. While this would be raising awareness for CaringKind. the sixth time this game was played, Throughout the season, the ladies and it would be the first under the newly gentlemen of TackleALZ NYC have On the first day of May, clouds and rebranded event name TackleAlz NYC stood tall in the battle to destigmatize rains loomed, but that would not stop which further illustrates why these Alzheimer’s and dementia and shine a the 30 members of our Bike Tour team incredible women take the field, with light on the over 250,000 caregivers who were ready to brave the soggy, the support of the amazing coaches in New York City currently tackling but car-free roads of New York City. who help them prepare. To embrace this disease in their day-to-day lives. Starting in downtown Manhattan, the inclusiveness that has long been From rookie to seasoned vet to “retired” they rode through all five boroughs, one of the event’s greatest strengths, alumni both near and far, they stand before eventually completing the tour the teams changed their names to together as a community united to on Staten Island by the ferry. And the BruCrew and the Blondetourage. raise awareness and funds for our while the rains were unforgiving on cause. On behalf of the CaringKind tour day, our team’s resolve remained As game day started, the fans were ready Board, staff, and, most importantly, intact because of their commitment to to buckle down for the night. Would the our clients, we thank all of our athletes the cause and to those who live with BruCrew, who had impressively raised for their dedication and support. or care for someone with Alzheimer’s over $80K leading into the evening win disease. As the first Bike Tour team back the trophy? Or would the reigning representing the CaringKind Athletes champs, the Blondetourage, who had to End Alzheimer’s signature orange, for the second year in a row raised #100KbyGameday, be able to pull off the repeat? A physical but fair game played out for the crowd, and the game was too close to call all the way until the fourth quarter when the Blondetourage tied the score. But in that last quarter, a spark must have been lit because From left: 2016 TackleALZ NYC Hall of Fame the BruCrew was able inductees Ashley Ross, Jennifer New, Cassie to light up its offense in Sklarz and Brie Corona-Galo. Each of these incredible athletes have raised over $10,000 The 2016 Athletes to End Alzheimer's TD Five Boro Bike Tour team in their TackleALZ NYC careers.

30 24-Hour Helpline 646-744-2900 Join Us On Social Media!

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caringkindnyc.org 31 This year we’re launching our first Alzheimer’s walk under our new name, CaringKind. We need you to walk with us to give care, increase awareness and raise funds to help everyone affected by an Alzheimer’s or dementia diagnosis.

Join us! Register as a walker and you’ll receive a free Walker Care Package with our signature orange shoelaces to help spread the word in the lead up to the event and wear proudly on the day of the walk.

MANHATTAN BROOKLYN QUEENS STATEN ISLAND SUNDAY, SUNDAY, SUNDAY, SUNDAY, OCTOBER 16 SEPTEMBER 18 SEPTEMBER 25 Flushing Meadows OCTOBER 2 Riverside Park Coney Island Boardwalk Corona Park South Beach

Sign up today for a 2016 CaringKind Alzheimer's Walk! caringkindnyc.org/walk • (646) 744-2900

32 24-Hour Helpline 646-744-2900 “#1 Resort for families in Registration Form the United States” 24-hour Helpline 646-744-2900 www.caringkindnyc.org/walk

Complete and mail to: ATTN: WALK 360 Lexington Avenue, 4th Fl. New York, NY 10017 □ Manhattan □ Brooklyn □ Queens □ Staten Island Participation Type: □ Virtual Walker □ Walker

Role: □ Individual Walker □ Join a Team □ Create a Team

Team Name:

Walker Information:

First Name: Last Name:

Billing Address:

City:

State:

Zip:

Phone Number:

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Assumption of Risk, Release and Permission:

This event involves walking - an activity which may include risks such as, but not limited to, falls, interaction with other participants, effects of weather, traffic and conditions of the road. ; a story about bringing In consideration of being allowed to participate in this event, I hereby expressly assume all W ol c risks, including bodily and personal injury, death, property loss or other damages of any kind people together... arising in any way out of my attendance or participation in this walk and related activities. It is my responsibility to dress appropriately. Although route maps, rest stops, refreshments, and other assistance may be made available during this event, I am solely responsible for my own health and safety. I represent that I am physically fit and able to attend or participate in this An award-winning, inclusive, family resort event. I hereby for myself, my heirs, executors and administrators, release, discharge and agree not to sue CaringKind (f/k/a the Alzheimer's Association, New York City Chapter), its offices, located in the Northern Pocono Mountains. their respective officers, directors, volunteers, employees, sponsors and agents, from any and all liability, claims, demands and causes of action whatsoever, arising out of my participation in or attendance at this event and related activities whether resulting from the negligence of any of the above or from any other cause. I agree that my assumption of risk and release hereunder shall be as broad and inclusive as is permitted under applicable law. If any portion of this agreement is held invalid, the remainder shall continue in full force and effect. I grant full permission in perpetuity to the organizers of this event to use, re-use, publish and re-publish my name and image as a participant in the event in photographs, video or other recordings.

I have read, understand and agree to the terms of this agreement. If Participant is a minor, the parent or guardian must agree to the below:

I am the legal guardian of Participant, and I hereby consent to his/her participation. I have read the foregoing agreement, and I hereby agree on behalf of myself and Participant to its terms.

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caringkindnyc.org 33 Summer/Fall 2016 Calendar

Please call our Understanding Dementia Seminar: 24-hour Helpline What You Need to Know and Where to Go at 646-744-2900 Sessions provide family members and friends with information about to register. Alzheimer’s, other types of dementia, resources, and services available. Registration is required. Upcoming Dates in English: Space is limited. August 17 1:00 - 3:00 p.m. Brooklyn August 17 5:30 - 7:30 p.m. Manhattan All meetings are free of charge August 24 5:30 - 7:30 p.m. Manhattan and subject to change. September 1 6:00 - 8:00 p.m. Queens September 9 12:00 - 2:00 p.m. Manhattan You may notice that September 13 5:30 - 7:30 p.m. Manhattan specific locations of upcoming September 21 5:30 - 7:30 p.m. Manhattan meetings are not listed. You will September 21 6:00 - 8:00 p.m. Brooklyn receive location information during your registration call. October 5 3:00 - 5:00 p.m. Queens October 11 5:30 - 7:30 p.m. Manhattan We wish to thank October 14 12:00 - 2:00 p.m. Manhattan the following October 19 1:00 - 3:00 p.m. Brooklyn community partners: October 19 5:30 - 7:30 p.m. Manhattan

November 3 3:30 - 5:30 p.m. Queens AHS Caring Communities November 8 5:30 - 7:30 p.m Manhattan Atria Senior Living, Kew Gardens Upcoming Dates Just for Professionals: Heights & Hills Riverstone Senior Life Services September 14 3:00 - 5:00 p.m. Manhattan The Elly & Brochie Kleinman OHEL Upcoming Dates in Spanish: Regional Family Center August 17 5:30 - 7:30 p.m. Manhattan Selfhelp Alzheimer's Resource Program Upcoming Dates in Chinese:

August 27 10:30 a.m. - 12:30 p.m. (Mandarin) Manhattan October 29 10:30 a.m. - 12:30 p.m. (Cantonese) Manhattan

Placing Your Relative in a Nursing Home Medicaid Home Care Seminar: A Practical Guide to the System Sessions educate caregivers about the steps involved in nursing placement, paying for care, Caregivers are guided through the application process for Medicaid home care easing the transition, and being service. Prior attendance at a Legal & Financial Seminar is required. a successful advocate for the resident. Upcoming Dates: September 1 5:30 - 7:00 p.m. Manhattan Upcoming Dates: October 6 5:30 - 7:00 p.m. Manhattan Manhattan November 3 5:30 - 7:00 p.m. Manhattan September 20 5:30 - 7:00 p.m.

34 24-Hour Helpline 646-744-2900 Summer/Fall 2016 Calendar

Family Caregiver Workshops Legal & Financial Seminar During this 10-hour workshop series, caregivers learn to view the world from the perspective of the person with dementia. They also learn how to communicate more An attorney specializing in elder effectively with the person for whom they are caring and receive new insights on how law discusses important topics to manage the challenging behaviors often associated with Alzheimer’s disease, as well as the importance of self-care. Attendance is required at all workshops in a series. caregivers should understand before meeting with a personal Upcoming Series Dates: attorney. Topics include power of Tuesdays September 6, 12, 20, 27 5:30 - 8:00 p.m. Manhattan attorney, guardianship, Medicaid Wednesdays September 7, 14, 21, 28 12:00 - 2:30 p.m. Manhattan eligibility, long-term care insurance, healthcare proxy, and more. Mondays October 3, 17, 24, 31 5:30 - 8:00 p.m. Manhattan Thursdays October 6, 13, 20, 27 12:00 - 2:30 p.m. Manhattan It is recommended that you attend an Understanding Dementia: What Upcoming Series Dates in Spanish: You Need to Know and Where to Thursdays October 6, 13, 20, 27 5:30 - 8:00 p.m. Manhattan Go Seminar prior to attending.

Upcoming Dates in English: Manhattan August 15 5:30 - 7:00 p.m. August 25 5:30 - 7:00 p.m. Monthly Education Meetings September 19 5:30 - 7:00 p.m. September 22 5:30 - 7:00 p.m. Meeting topics change monthly based on questions received from caregivers. October 3 12:00 - 1:30 p.m. Upcoming Series Dates (all meetings from 6:00 - 8:00 p.m): October 17 5:30 - 7:00 p.m.

October 27 5:30 - 7:00 p.m. September 12 November 7 12:00 - 1:30 p.m. Listen Up! Why Hearing Health is Important for Families Living with Dementia • Learn how to address the causes and signs of hearing loss Upcoming Dates in Cantonese: • Discover communication strategies and technological support Manhattan available September 29 2:30 - 4:00 p.m. • Find out ways to manage the emotional impacts related to hearing challenges Speakers: Jeffrey Wax, LCSWR, Director of the Emotional Health and Wellness Center at the Center for Hearing and Communication (CHC); Carolyn Ginsburg Stern, Manager of the Center for Hearing and Aging at the CHC

October 17 Please call our Lewy Body Dementia: One of the Most Common Dementias You've Never Heard Of 24-hour • How is LBD different from Alzheimer's disease and Parkinson's disease? Helpline at • Why is it often misdiagnosed? • What kind of support is available for caregivers in NYC 646-744-2900 Speakers: Norma Loeb, Founder & Executive Director at the Lewy Body Dementia Resource Center of New York; Yael Zweig, Adult & Geriatric Nurse to register. Practitioner at the NYU Langone Medical Center

caringkindnyc.org 35 NON-PROFIT ORG. U.S. POSTAGE PAID ST. JOSEPH, MI 360 Lexington Avenue, 4th Floor PERMIT No. 244 New York, NY 10017 CHANGE SERVICE REQUESTED caringkindnyc.org 646 744 2900 — 24-hour Helpline

Sign up today for a 2016 CaringKind Alzheimer's Walk!

MANHATTAN BROOKLYN QUEENS STATEN ISLAND Sunday, Sunday, Sunday, Sunday, September 25 October 16 September 18 October 2 Flushing Meadows Riverside Park Coney Island South Beach Boardwalk Corona Park

caringkindnyc.org/walk • (646) 744-2900